Co-director, Jane and John Justin Neurosciences Center, Cook Children’s Hospital

M. Scott Perry, MD

"We have resources on there. We’re also linking out to the Epilepsy Foundation’s resources as well as specific resources just for the very severe cases.”

As a way to raise awareness of the importance of seizure action plans (SAPs), the Dravet Syndrome Foundation, Lennox-Gastaut Syndrome (LGS) Foundation, and Tuberous Sclerosis Alliance came together to launch the inaugural SAP Awareness Week, an initiative that was held from February 8 to 15, 2021. The collaboration of the 3 advocacy organizations, titled the SAP Coalition, featured a social media campaign and new website designed to highlight the need for these plans for patients with epilepsy, especially should an emergency occur.

In efforts to continue these ongoing conversations, 

 hosted a roundtable discussion with multiple notable leaders within the epilepsy community. Scott Perry, MD, co-director, Jane and John Justin Neurosciences Center, Cook Children’s Hospital; Orrin Devinksy, MD, director, Comprehensive Epilepsy Center, NYU Langone; and Tracy Salazar, PhD, executive director, LGS Foundation, all participated in the multi-segment conversation.

In this fifth segment, Salazar gives her thoughts on the benefits of utilizing an advocacy organization as a resource when constructing or updating an SAP. She also details how their role can be crucial for both a parent and patient perspective.

Videos

A roundtable discussion featuring Scott Perry, MD, Orrin Devinsky, MD, and Tracy Salazar, PhD, details how advocacy organizations can help guide patients with epilepsy and their caregivers with a seizure action plan.

Role of Advocacy Organizations in Seizure Action Plans, Seizure Education

"Things change. A seizure action play is not something that you are required to visit only once a year. Seizure patterns change. Seizure types, seizure frequencies change. It is important to see your provider if these sorts of things change.”

The differences in seizure action plans (SAPs) for children as compared to adults with epilepsy can be staggering. Oftentimes children will have their SAP developed shortly after birth and must maintain and update them as a requirement for parts of schooling. Children can struggle with fully understanding their condition, how their seizures can evolve, and what to do during an emergency setting.

For adults, though, they may have left their parents for a job or educational reasons and now live alone. The lack of resources or caregivers at the disposal for adult with epilepsy can definitely raise the need for a more constructed SAP, according to Orrin Devinsky, MD. Devinsky, the director of the Comprehensive Epilepsy Center at NYU Langone, along with other epilepsy specialists, feel as though the important question when developing an SAP is “who is around?”

In efforts to raise awareness about SAPs as part of the inaugural SAP Awareness Week, 

hosted a roundtable discussion that included Devinsky, along with Scott Perry, MD, co-director, Jane and John Justin Neurosciences Center, Cook Children’s Hospital, and Tracy Salazar, PhD, executive director, Lennox-Gastaut Syndrome (LGS) Foundation.

In the fourth segment, the panel discussed the differences in seizure action plans as a child enters adulthood, the need for constant adjusting and monitoring, and why the resources around a patient with epilepsy will help tailor their SAP going forward.



A roundtable discussion featuring Scott Perry, MD, Orrin Devinsky, MD, and Tracy Salazar, PhD, details how seizure action plans change from pediatrics to adults and the need for adjustments.

Adjusting Seizure Action Plans With Age

"Certain conditions are more prone to go into status epilepticus or other types of emergencies. Obviously, Lennox-Gastaut [syndrome] is a great example. Dravet syndrome is another fine example.”

Epilepsy isn’t a single disease or condition. There are many types of epilepsy with different symptoms and patterns. Within these epileptic groups, there is also a range of seizure types, the frequency in which they occur, and the methods in which they are treated. Some epileptic types are considered more severe and can encounter a greater number of seizures or require a certain number of rescue medications compared to others.

With that in mind, from a caregiver perspective, developing and tailoring a seizure action plan (SAP) to an given patient with epilepsy may lead to better response when seizures occur and even more situational awareness on whether to refer to paramedics.

As part of SAP Awareness Week, February 8 to 15, 2021, 

 hosted a roundtable discussion with multiple leaders within the epilepsy community. Scott Perry, MD, co-director, Jane and John Justin Neurosciences Center, Cook Children’s Hospital; Orrin Devinksy, MD, director, Comprehensive Epilepsy Center, NYU Langone; and Tracy Salazar, PhD, executive director, Lennox-Gastaut Syndrome Foundation, all participated in the multi-segment conversation.

The third segment of this discussion deals with how SAPs can vary across epilepsy types, and why even patients without epilepsy should understand what do to do if someone around them is having a seizure.

A roundtable discussion featuring Scott Perry, MD, Orrin Devinsky, MD, and Tracy Salazar, PhD, details the way seizure action plans can differ depending on seizure phenotype and frequency of seizures.

Differentiating Seizure Action Plans by Epilepsy Type

"Adults should know, and more importantly, the people around them should know what to do.”

In a recent study, only 30% of adult patients with epilepsy responded that they have a seizure action plan (SAP), and only 45% of pediatric patients had an SAP. While adults with epilepsy will have very differently developed SAPs than pediatric patients, the importance of maintaining and adjusting an SAP as a patient gets older is still critical.

Developing an SAP can provide clarification on patient and caregiver concerns, such as understanding what to do during a seizure, when watchful waiting is appropriate, when to intervene with at-home rescue medication, when to call 911 or go to the hospital, and much more. For adults with epilepsy, they may have moved away from their parents and are now responsible for their own actions with no caregiver around them.

As part of SAP Awareness Week, February 8 to 15, 2021, 

 hosted a roundtable discussion with multiple leaders within the epilepsy community. Scott Perry, MD, co-director, Jane and John Justin Neurosciences Center, Cook Children’s Hospital; Orrin Devinksy, MD, director, Comprehensive Epilepsy Center, NYU Langone; and Tracy Salazar, PhD, executive director, LGS Foundation, all participated in the multi-segment conversation.

The second segment of the discussion is centered around the need to improve SAP rates among adults with epilepsy, and why the importance of them does not deteriorate as a patient gets older.

A roundtable discussion featuring Scott Perry, MD, Orrin Devinsky, MD, and Tracy Salazar, PhD, covers the staggeringly low percentage of adults with epilepsy who have seizure action plans.

M. Scott Perry, MD

Articles

Role of Advocacy Organizations in Seizure Action Plans, Seizure Education

Adjusting Seizure Action Plans With Age

Differentiating Seizure Action Plans by Epilepsy Type

Improving the Rates of Seizure Action Plan Usage in Adults With Epilepsy